The Massachusetts CFIDS/ME & FM Association, a 501(c)3 founded in 1985, exists to meet the needs of patients with CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome, also known as Chronic Fatigue Syndrome), ME (Myalgic Encephalomyelitis) or FM (Fibromyalgia), their families and loved ones. The Massachusetts CFIDS/ME & FM Association works to educate health-care providers and the general public regarding these severely-disabling physical illnesses. We also support patients and their families and advocate for more effective treatment and research.
- Last Updated: 08 June 2018 08 June 2018
We conducted a short 5-question survey during the month of April, 2018, and publicized it within the U.S. ME/CFS community. We asked respondents to briefly describe their experience with their (U.S.) commercial health insurance provider, identify the insurance provider, and rate their overall experience on a scale of 1 to 5 from very positive to very negative. We also asked if they had received a diagnosis of ME, CFS, or ME/CFS. We received 187 responses. Results were tallied by hand. 95% of respondents had a diagnosis of ME/CFS, or ME/CFS. 22% reported very positive or positive experiences, 16% neutral, and 62% negative or very negative.
- Last Updated: 08 June 2018 08 June 2018
Not able to attend screenings of Unrest at the Massachusetts Dept. of Public Health, Massachusetts State House or the Regent Theatre?
Videos (opening remarks and panel discussion) from these events are now posted.
Video from Massachusetts Department of Public Health (Boston, March 2018)
Video from Regent Theatre (Arlington MA, Nov. 2017)
- Last Updated: 26 April 2018 26 April 2018
The entire Massachusetts Congressional delegation (two Senators and all nine Representatives) signed a statement of support for ME/CFS patients which was shown on the occasion of the screening of the documentary film “Unrest” on November 12, 2017 at the Regent Theatre in Arlington, MA. Our delegation's support for patients with ME/CFS was projected on the big screen at the event, which was attended by more than 360 healthcare professionals, ME/CFS patients, families, and supporters from Massachusetts and New England (VT, ME, CT, RI). We were proud to announce that Massachusetts is the first state that has had such a statement from every member of its congressional delegation.
- Last Updated: 05 December 2017 05 December 2017
Our special showing of the Sundance award-winning documentary, UNREST, by Jennifer Brea on Sunday, November 12, 2017 at the Regent Theatre in Arlington, MA was a huge success, thanks to our many volunteers who organized the event, our many co-sponsors who promoted the event, and the more than 360 people who attended, including many health care professionals and researchers.
- The event was packed! The UNREST production team believes our event was the most well-attended community-organized screening of Unrest ever held in the country.
- Support from Elected Officials: The joint statement of support from the entire Massachusetts Congressional Delegation, read aloud at the event, will be a role model for other states to follow. We hope you and your friends will sign this digital "Thank you" card to the MA Congressional Delegation (click the button "ADD Kudo/Image/Video.")
- Panel/Video: Our panel moderator, Deborah Becker, WBUR (NPR’s Boston station) senior correspondent/host, and our panelists, Mary Dimmock (ME Advocate), Michael VanElzakker (ME Researcher), Kiki Zeldes (ME Patient and Women’s Health Advocate) and Lisa Hall (Healthcare Professional), did a wonderful job sharing their perspectives and fielding audience questions for 45 minutes. Video of the opening remarks, panel discussion and audience Q&A is now online to share with others. This awareness-raising video is available to be shown on local cable TV stations in New England and the entire US. If you can help by asking your local cable station to air it, please contact us.
- 19 co-sponsoring organizations: Government, healthcare, academic, disability, ME/CFS, religious, arts, and women's organizations co-sponsored our event (all are listed here). They included the MA Department of Public Health and the Division of Women's Health at Brigham and Women's Hospital. This was the most diversely-sponsored ME/CFS event ever held.
UNREST is a moving and beautiful film and an excellent way to raise awareness about this devastating disease that impacts an estimated 28,000 people in Massachusetts and 1 to 2.5 million in the US. We invite you to help us continue to raise awareness about ME/CFS in the medical and healthcare community. Are you available to discuss bringing UNREST to your institution? If so, please contact us.
New Guide: Additionally check out this MEAction Best Practices Guide for how to organize larger, impactful UNREST events. They used our successful event as their case study.
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Notice about names
The Massachusetts CFIDS/ME & FM Association would like to clarify the use of the various acronyms for Chronic Fatigue Syndrome (CFS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (ME) on this site. When we generate our own articles on the illness, we will refer to it as ME/CFS, the term now generally used in the United States. When we are reporting on someone else’s report, we will use the term they use. The National Institutes of Health (NIH) are currently using ME/CFS. The Centers for Disease Control and Prevention (CDC) are calling the illness CFS.
Until there is consensus on a name for the illness, the Massachusetts CFIDS/ME & FM Association name will not change.